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Reproductive Justice and Endometriosis: Discrepancies Through Cultures - Bruno Van Herendael, MD

Reproductive Justice and Endometriosis: Discrepancies Through Cultures - Bruno Van Herendael, MD

International Medical Conference Endometriosis 2025:
Endometriosis 2025: Your Mother Should Know, Your Doctor Should Know Better!

Reproductive Justice and Endometriosis: Discrepancies Through Cultures - Bruno Van Herendael, MD

 

My next speaker is going to be Dr.Herendael. As soon as I can get my thing, is Dr. Bruno Van Herendael. There it goes. He's Meredith's professor of endoscopy in gynecology at the University of Serbia and the scientific director of the International Society of Gynecologic Endoscopy. He's been at the forefront of advancing endoscopic techniques for diagnosing and treating complex reproductive health and has contributed significantly to our understanding of both endometriosis and other gynecologic diseases.

Thanks a lot, Dan, for the kind introduction. So again, and well I follow the previous speaker that it is challenging what Tamir asked me to do and I want to thank him for inviting me again to talk to you because if we talk about reproductive justice and endometriosis, well it is definitely something that most of the doctor, the physician should better know and maybe the mothers to a certain extent. Of course it's not only my work, it's the work of Alfon Rosati and GI Florio from Rome endoscopist and ultrasonographer of Emmanuel Zao, professor at in Kinsa, the Democratic republic in Congo, bash Gula also in South Africa. And Linda Teash, who is actually structuring an awareness project in the city of Lige in Belgium. So if we look at what we know, and that is actually, let's see what we know, how things are at the moment, and the importance of the prevalence of this disease, then some things are striking.

We know this for years, we know this for over 20 years, and you see that actually it's painful, and it is in the United States alone and these are numbers that are from the 2004, 2005, just to tell you what the problem is that it is actually 7 million and in the world it's estimated over 70 million. But that is definitely an underestimation as we, with the international society, just see what's happening around us. It's a leading cause of infertility. That's what talk is about. And chronic pelvic pain and of course one of the main reasons for gynecological surgery, if you realize that over 120,000 hysterectomies are performed on the 500 that's more than you see then it is nearly a third of what is done in worldwide in annually. Well worldwide I wouldn't say, but that is an estimation that we see in figures of this year and it's more prevalent than breast cancer.

And yet there's something that we seem to miss there and it can cause infertility in about 35% of women. And that, for example, in continents like Africa and Asia and here also is quite a problem. And then we show actually that can be diagnosed very difficultly, definitely only by laparoscopy. And so the amount of pain that is also something we know is not necessarily related to the extent of disease. Could that be a reason? Because you see that here that is 1999 for Christ's sake. How is it possible that we cannot, well that we made progress a lot of progress and I agree with that, but why did we not yet abolish this problem? Because you see that actually in more or less 60% there is a severe problem of discomfort and that is just on a visual analog scale. And so with this miner we go up to 80 to about 20% and then chronic pelvic pain, something like that.

The deeper dyspareunia, because we are talking about young people, it's a little bit less but still it is there. Why is that? Can I go back? How do I go back? I dunno. Is it the one, okay, let me see. There's one missing there but that's okay. You see from 2004 we knew, we know actually why some of these endometriosis is really painful because there is a dissection actually of some of the nerves and in the midst of, for example here, the large bowel muscularis that has been proved and anatomically histo chemically with all the tests that available at that time. So yeah, I think I'm getting a little bit confused there. Look at it.

Okay, so I'm finding the specific balance I think is that a problem? Is that a problem to referral if you got pelvic pain on the one side and awareness and quality of life and fertility eventually hope to refer to someone who can deal with it? Well that seems to be the problem because there we are in the minus and then on the other side, apparently nothing happens. That is quite important enough. If we look at the based medicine, evidence-based Cochrane library, evidence-based surgery, some people would not like the term, but sometimes you have to take that so that we know who is doing what and if there specialists, the knowledge on the tank is still not sufficient. The types of endometriosis and then the surgical skill on the one hand. So there seems to be a discrepancy here.

I'm sorry about it but it doesn't seem to work very well. Okay, good. Right, so then we have to come back maybe to the physiology of the menstruation, right? But I think I missed out on one, which is quite important. Yeah, I missed out on one. Okay, good. Maybe you do it and because here it seems to be, this is a picture on the right of the screen that I took that must be in the, well about 50 years ago, I think in the beginning of the eighties with a carbon dioxide hysteroscopy. You can imagine this is a menstruation second day of the menstruation. You see on the fundus you see that there is barely any endometrium left and then you see the endometrium with the blood collected down. What we sometimes actually miss out on is maybe on the mechanics of this menstruation and Samsung at the time was maybe the first one who actually realized that there is blood coming out, but there's also blood well contained by the endo cervix.

And so at that moment of course there will be a spread through the peritoneum that for sure. And the problem is that we cannot just tell the patients actually fuss about nothing. That is not the way it should be told. You see? But in the UK for example, to the latest study, 20 24, 70 8% of the patient, when they go in to the gp, they are told it's a lot of fuss about nothing. So there's definitely something we are not allowed to talk, to tell to the patient next. And then the physiology because the same thing, you got the physics and then the mechanics and then the physiology. Because when this commission takes place then there will be this process of especially the prostaglandins and korins and the vasopressin and they will actually close the cervix. So that's something even worse. And so then in a sense that the outflow will be hampered and there will be more flow through the tubes, which is for these patient actually two times a problem.

That is the contractions due to the prostaglandins and the RINs, the ute of the uterus, which is comparable by contractions during labor in some of the patients. And then of course there is this counteraction from the blood that is strapped into the uterus. And of course the prostaglandins, they can also cause headaches, nausea, blotting and vomiting and diarrhea, which is also in the pattern Next. So we know all this, we know these symptoms, we know that. So what is the problem? Why are we not more aware of this endometriosis, right? Because the patients do come, that starts about 24 to 48 hours before the menses and we got this vomiting, diarrhea, headaches, and we have these listed and this is a publication of 2025. These things are listed. So what is the problem next? And again, we know what we can do about it, we can do about it and we can treat that and try to help the patients and there is a step in the treatment and we still actually do not do enough there.

I dunno. Why is that? What's the problem again? 2024 and over 4,000 patients as you can can see, 47% of to a GP more than 10 times, 70% go more than three times and 10% get a diagnosis actually in the second visit. But that's the second visit. That means more or less half a year apart, 20% of the gynecologists got knee 10 times actually or more before they diagnose. Why is that next? You see here actually the number of the average delaying diagnosis is quite staggering, right? And this is actually more or less the same. This is the graph you see on your left is one of the beginning of this century. And on the other side you got what is actually happening in the UK last year we have a delay of eight years and 10 months in 2024 and that increased with 10 months due to the covid pandemic.

See there is correlation there, but you see also that's in England and Scotland, it's nine years and five months in Northern Ireland and nine years and more or less 11 months in Wales. So you see even there are discrepancies. Well again, we have to ask ourselves what is the problem there? Okay, the other thing is for the mothers actually of course we have this problem that in some cultures and then I'm speaking more about religious and very traditional and very conservative, well not, I wouldn't say countries, I would just say communities. We have this idea that the mothers say to their daughters, well you have to work here. You cannot just sit still, you cannot just keep to yourself. So these young ladies, they have a problem with a perception of themselves that is not correct and they think they are lost and they need much more support.

Again, we know that. We know that. And again, we should take action on that. So what can we do? Well there is a thing like here in Columbia University we've got endometriosis research apps where you can register everything. And even in Africa we use this for awareness because everybody has, even in Africa, everybody has a cell phone. And so you can put in those apps and the one that we use most is Fluter, where you've got the period and symptom tracker, at least in the English speaking countries in Africa for example, and in the Middle East and you've got an option to learn about endometriosis. So that's an education and awareness that we can bring as a society. But still there is this problem of understanding next. So what is the doctors? Well the doctors, they have a positive family history. It's already a told that it is actually nearly certain that we have a very strong genetic compound in this particular disease that affects so many people.

We've got, if there actually are increased periods where the patient use contraceptive continuously for example, and they continue to have this severe dysmenorrhea, one should actually do an exam. And so we got an increased frequency also of school absentism and that should also warn the doctor and ring a bell there. This is not normal and that is the problem. Most of these symptoms are taken for granted, which they are not. And so there is a need again that we should create and that's what we are trying to do with the society to have a kind of questionnaire that we then bring to the gps, to general practitioners and the gynecologist and actually well get that done or get that filled in so that they can actually make more or less make a diagnosis there. This is of course chronic pelvic pain, quality of life. We've got the emotional feelings and then the background.

Of course, if your mother has endometriosis, why should the daughter be excused of endometriosis? They have to realize that. And while the emotional stability of course within the family context, that brings another burden to that particular patient. Next one. So William Osler, he said, if you listen carefully to your patients, they will tell you the diagnosis and that is correct. Why are we not listening enough to these patients? Why are we listening very focused to these patients. If a young patient comes in and she talks or she has a complaint of chronic pelvic pain or whatever, then of course you have to really listen to that patient. She will tell you and well that is in the endometriosis clinic that we run since 1990. I think this is one of the strong points that we've got not only a doctor but the nurse listening to these patients and bring details to the doctor that sometimes are not told to the doctor.

In a specialist setting, in a GP setting, general practitioner, that's a different story. But you see you've got 60% of these patients have chronic pelvic pain like we saw on the graphic infertility that can go up to 50% and the diagnostic delay of nine to 12 years and the previous multiple laparoscopies, which is also a problem. Some of our colleagues go in, have a look, come out, don't do anything. And sometimes I got very shocking details with photographs of lesions that they didn't even discuss with the patients. Next. So what is there that this disease keeps actually well in the dark, this is from Thailand, 2004. Is it Thailand? Yes, it's Thailand where you got over 90%, 94% correlation between laparoscopy and clinical exam. So the clinical exam can give you in 94% a diagnosis in some cases, not especially in the Port of Douglas. So why do we not do it? And so this is a blinded study. That's the guy who did the exam. It's not the same guy as the Laparoscopies and they were blinded. So the laparoscopies did not know the exam before.

So we have these tools. Of course I say the risk progress, there is difference between when Harry came to my very old hospital in the early 2000 to operate American patient because it was easier for them and less expensive to come to fly over being treated and fly back than here in the states in some instances. And so we operated quite a few with Harry there. And so at that of course we didn't have the ultrasound, we had a 2D ultrasound like the upper picture, but we could already correlate this with the picture on laparoscopy. Nowadays of course we have this particular 3D ultrasound, the color ultrasound, and you see that we can clearly make out even the extent of endometriosis in an ovary like you see on the lower pictures next. And so we see these are patients and their mothers in one well with one in one office in South Africa.

And you see actually there is so many different races, it was already pointed out we have to listen to every single patient with the same attention. Definitely. And there is definitely this, if you see the mother, you treated the mother for endometriosis, be careful for the daughter next. And so what we do in Flanders, well in Flanders now we are very lucky to have the same minister of health for the next, well, he will be there for eight years. He was there for and now another four. So what we do is we go to the GPS awareness, we go from the gp. The GP then sends the patient to the specialist. The specialist sends this to a regional center where you've got a fertility clinic and we've got a pain clinic and then to a super regional. And in flounders with about 12 million people, we will have two centers of reference.

Where in University of Lun, professor Toti, she operates day and night, more or less on endometriosis. So she knows what she's doing. That is the main thing next. And so the awareness and the goal, goal and future directions, well it should be our goal to educate all the patient, not only the patient, but especially the general practitioners and the surgeons as well because of course it's there that we can reduce the delay. This is what we have to do through an early diagnosis and to early and actually appropriate intervention. And of course through treatment and eradication by investment in research, which is very necessary. Research has taken on over the last two years very, very rapidly. But it should still be there for at least the next 20, 25 years until we come to the end of this particular disease next. And so that is the reason why foundations like the Endometriosis Foundation of America and the endometriosis Foundation are necessary to fund these research to fund our awareness systems so that we can actually go out in the schools of these particular countries and tell the young girls, not the mothers only, but also the young girls, what could happen next.

And so then I hope, and I'm sincerely hope that we will bring the balance again to a level so that we can say, yes, we are working together actually to eradicate this disease next. And so actually education to inside to research is the most powerful weapon that you can use to change the world. And Nelson, he knows what he's talking about. Thank you very much for your attention.